On Special Needs Advocacy, Diabetes, and Ignorance

Wow, I haven’t blogged in quite a while. So much has been going on that I haven’t kept up with it all.

I’ve spent much of my time in the last couple of months helping my husband with his campaign for re-election our town’s School Committee, on which he served for the past six years. Elections can bring out strong passions, and usually candidates are supported (or opposed) on just a few issues.

This election was no different, and over the course of a few weeks it became clear that one issue on the table was advocacy for children with special needs — and that people didn’t believe my husband wasn’t a good candidate on this issue. When, on a local forum, it was pointed out that as a father of a daughter with special needs, Ray felt personally invested in the cause and has advocated for years, this assertion was dismissed by the original poster, with a “pfff, his daughter has diabetes, and so what that he makes sure a nurse accompanies her on a field trip, that’s whatever.”

I held my tongue then, but now that the election is over and my husband lost his bid for re-election, which I believe was in no small part because of this issue, I am going to speak up now. Loudly. Clearly.

Diabetes is not “whatever.”

Diabetes is more than a nurse on a field trip (though that’s nice, because, you know, life threatening stuff).

Diabetes is a medical condition that can, and does, affect a child’s ability to think and learn.

Signs of high or low blood sugar (hyperglycemia or hypoglycemia, respectively) vary in different children. Symptoms of low blood sugar can include feeling shaky, blurred speech, headache, sweating, tiredness, dizziness, hunger, and changes in behavior, and these symptoms may progress to severe hypoglycemia, which causes loss of consciousness and seizures. Symptoms of high blood sugar may include increased thirst, increased appetite, increased urine, tiredness, blurred vision, and, if ketoacidosis—a life-threatening condition caused by a lack of insulin that forces the body to use fat as an energy source rather than carbohydrates, which in turn releases acidic chemicals known as ketones into the blood—develops, symptoms may include extreme thirst, rapid shallow breathing, nausea, vomiting, abdominal pain, and even a fruity odor. — Desmond Schatz, M.D., quoted from the Juvenile Diabetes Research Foundation

Now, imagine trying to think and learn at school while suffering these symptoms.

Diabetes CAN and DOES have an impact on a child’s ability to function and learn at school.

This is why, for years, parents of children with diabetes have had to fight to make the science understood, and to insist schools accommodate these children and support them equitably. We’ve had to do this because diabetes is dismissed as a “whatever” medical condition.

This is why every year my husband and I sit down with nurses and counselors and other school staff, to craft carefully the words to ensure these accommodations are met, and that my daughter is not dismissed by next year’s teachers as “whatever.”

This is the same fight parents of children with other special needs have also been fighting for years and years.

The needs are different, but the fight for parents is the same, to advocate with science on their side:

That the child with ADHD isn’t just being a troublemaker.

That the child with executive function disorder is not simply sloppy and disorganized.

That the child with dyslexia is not stupid.

That special needs children just need to be understood and helped be the best students they can.

We have been fighting this fight since our daughter’s diagnosis. Because even after all the science and exposure and explanations and advocacy, some people, like that person (or persons) in my town don’t understand what life with diabetes is like.

My husband lives with his daughter’s diabetes every day, and because of that, has always worked hard to make sure that other children with other special needs get the support and advocacy they deserve. He wants for them what he wants for his daughter. He’s fought for them as he has for her.

And to that person on that one local town political forum, I just want to say, your ignorance was sad and painfully clear, and you did exactly what you accuse others of doing to you and your children — not understanding or supporting families with special needs children.

Discriminating. Judging. Dismissing.

Shame on you.

 

 

Police camp: personal safety and butt-kicking

During my week guest editing at the Hingham Patch, I had the freedom to write about whatever I wanted. I didn’t have to attend local meetings and was not assigned any stories in particular. It was nice, and gave me the opportunity to see my town in a different way, although sometimes I think I work better when someone says “write about *this*.”

When I was brainstorming ideas, I remembered that one of Ellie’s friends had signed up for police camp that week. I didn’t know much about it (needless to say, I hadn’t signed my kids up for it), so I thought it would be fun to see what it was all about. And, holy cow, was I impressed. I wrote the piece and asked the officers if there was any way they could squeeze my kids in. Being the generous and dedicated people they are, the answer was yes.

The kids started radKIDS camp last Monday, and over the course of four days learned a tremendous amount about personal safety, telling the difference between good and bad strangers, and strategies they can use to avoid dangerous situations. I mean, everything from bike and bus safety, to calling 911, to escaping a house fire, to what to do if a stranger asks you for help.

A girl (not my child) from another radKIDS session, knocking down a police officer. Not too shabby.

In short, it’s a course on how to actually do the things we parents are always telling them to. Every class the kids got to practice the skills they’d talk about — for instance, we tell kids to call 911 in an emergency. In this class, they do it. We say “don’t get into a car with a stranger” — in this class, they practice exactly that. And they’ve also learned physical self-defense — how to hold their bodies in a strong, defensive way, as well as blocks, kicks and hits. And they have learned to use their voices — oh, my, how those voices have practiced being LOUD and firm — as a main form of self-protection.

The short class really instills in kids a certain amount of confidence that they didn’t start off with. By the end of the week, their legs are strong and their bodies alert. At the end of every day, when they practice their moves, thirty or so of them spread out in the gym in rows so it looks like a dojo, they respond with instinct. An officer shouts, “Rad Kids ready!” And every child jumps into the ready stance — all at once, like they’ve been training for years — legs firm, arms raised in both defense and challenge, and, with what seems like one voice, they shout: “Stay back! You’re not my mom! You’re not my dad!”

Today’s an exciting day. It’s the final class, and during it the kids face an obstacle course of challenges, showing what they’ve learned. The final challenge is to escape a stranger who tries to abduct them. The kids wear protective gear — and so will the officer who tries to assault them, and his is much heavier and complex, because these kids hit and they kick and they do it with all their strength — and, holy cow, some of these kids are strong — because even though today it will be just kindly Officer Rob under all that padding, today is the day they get to do everything they can to save their lives. To practice getting away.

I can’t wait to see what my four do — and hopefully will come back later to share some photos or video of it all. You won’t believe your eyes.

A lot of kids take this class year after year, and so will mine, from now on, because we know how quickly kids can forget. It’s the repetition, the practice that’s important.

The truth is, probably — hopefully — most of our kids will never, ever need to battle a predatory stranger. But I feel a whole lot better know that if that horrible scenario arises, mine will know what to do.

Celebrate reading and support global literacy

If you are visiting A Mom’s World, you are either a) one of my parents, b) following me on Facebook or Twitter, or c) someone who was searching for information about Pillow Pets (that old post sure gets a lot of hits!). But no matter who you are, one thing is true: you can read.

Have you ever thought about how awesome that is? That every day your eyes scan over squiggly symbols and you know what they mean? Those squiggles — on street signs and storefronts, in print and online newspapers and magazines, in books — give you information, teach you new things, open up new worlds, transport you to other galaxies. Think about it. Awesome.

We often take our literacy for granted, but worldwide over 793 million people cannot read.

This Wednesday is World Read Aloud Day, sponsored by LitWorld, an international organization with the goal of promoting literacy for all children around the globe. For the past two years, World Read Aloud Day has shared this message through thousands of participants joining in many activities. This year, LitWorld hopes to have one million participants — I’m pleased to say that I’m one of them.

What happens on WRAD? Well, reading. Out loud. To your own kids, to a classroom of kids — many brilliant authors will by sharing their words with children via Skype visits, but you could Skype a story to your nephew across the country.

LitWorld’s website has free downloads of worksheets and suggestions for how you can participate in your own piece of the world.

In A Mom’s World, the kids and I are going to make some videos to share. But until then, here is what my father did last year to celebrate World Read Aloud Day:

 

Are you participating? I’d love to hear about your plans!

Why kids won’t get to see “Bully”, why they should, and what you can do about it

Sometimes, I am absolutely, completely, mind-blowingly befuddled by the total insanity of well-meaning parents.

At the end of March, a documentary will be released to select theaters around the country, a film that could contribute tremendously to the fight to end the epidemic of bullying in our society.

Unfortunately, the people who most need to see it — kids in upper elementary and middle school — won’t get to.

Recently, the MPAA slapped an R rating on the acclaimed movie, “Bully,” because of language concerns.

Filmed over the course of one year, the documentary follows five families suffering the pain, violence and, for not one, but two families, the tragic results of bullying — the suicide of each of their sons. The film shows students at school and on the bus tormenting each other with words and fists; kids tell their stories and how they feel; and adults are presented in both the best and worst light.

I imagine that a few f-bombs might get dropped here and there, especially in the scenes where kids are whaling on and screaming at their victims. But apparently such language is inappropriate for kids to see. (Since the rating was limited to language only, I guess the brutality of the bullying is less disturbing than some cursing. Who knew?)

MPAA ratings are determined by what amounts to a focus group of typical American parents, culled from communities around the country, who decide how most people will feel about images. They are not connected to the film industry. According to the MPAA site, “Their job is to rate each film as they believe a majority of American parents would rate it, considering relevant themes and content.”

A quick scan of the ratings of last year’s R-rated titles shows that almost all of the ratings were given for reasons such as “strong sexual content,” “extreme violence,” “bloody violence,” “disturbing images,” “drug use,” “graphic nudity.”  Hardly any movies are given the dreaded rating for language only — other than “Bully,” some of last year’s big language offenders included “Carnage,” “Evil Things,” and “House Arrest.”

And, in case you didn’t know, here’s the explanation of what an R rating means, according to CARA (The Classification and Ratings Administration): CONTAINS SOME ADULT MATERIAL. PARENTS ARE URGED TO LEARN MORE ABOUT THE MOTION PICTURE BEFORE TAKING THEIR YOUNGER CHILDREN WITH THEM. GENERALLY, IT IS NOT APPROPRIATE FOR PARENTS TO BRING THEIR YOUNG CHILDREN WITH THEM TO R-RATED MOTION PICTURES.

The MPAA ought to reconsider the decision, and give the movie a PG-13 designation. The R rating virtually ensures that most parents will not even consider showing it to their kids, and no school in America could get approval to use it as a worthy teaching tool in their classrooms.

CARA defines PG-13 as: PARENTS ARE URGED TO BE  CAUTIOUS.  SOME MATERIAL MAY BE INAPPROPRIATE FOR PRE-TEENAGERS. Films such as “Batman,” “Captain America” “Cowboys and Aliens” “Rise of the Planet of the Apes” have garnered that somewhat more family-friendly PG-13 ratings, making them more appealing to parents.

Surely there are things more terrible than hearing a bullied 12-year-old drop a few F-bombs after he’s been brutalized on the bus for the 30th morning in a row?

On the other hand, a tortured 12-year-old is a pretty terrible image. Sadly, it’s one that a lot of kids see each day.

(I’m pretty sure a few of them have also heard an F-bomb or two. I mean, we hear “Moves Like Jagger” nine hundred times on the radio every day, and it’s pretty clear that all my kids know what that bleeped out word is, even if they don’t understand what it means or why it’s naughty.)

Okay, we all want our kids to NOT swear. I don’t curse in front of my kids, and they know better to even think about letting one slip out of their own mouths. But in the context of the bigger message of this movie, I could overlook a few inappropriate words.

Because, in the end, it’s about who should see this movie. Grownups can benefit from it, sure, especially those who shrug off bullying with phrases like “kids will be kids,” and “I was bullied and I survived, whatever, suck it up.” Others, who would do anything to stop the torture, will weep for these children — as we do whenever we read the newspaper or when our own children come home in pain — and perhaps become doubly inspired to effect change in their communities.

But the real audience for “Bully” is kids — those who will identify with all the players, from the victims to the bullies to the onlookers who ignore what’s happening.

Kids know who in their world is bullied. Maybe a movie like this would show them they are not alone, that they can make change, that what they experience is not a solitary, inescapable existence. That it doesn’t have to be like this. That the next time they walk past a bully terrorizing another kid, they should do something other than look the other way.

This movie won’t eradicate bullying, any more than having an entire elementary school student body hold hands and sing Kumbaya will. But a movie like this can start an honest conversation between kids and the adults in their lives;  witnessing real people in aching, and sometimes all-too familiar situations, can empower kids far more effectively than a study guide or once a month health class can.

A concerned teen in Ann Arbor, Michigan, has drafted a petition to ask the MPAA to reduce the rating from R to PG-13, so that more kids will be able to see it. When I signed it, over 130,000 people had also added their support.

Check out my links and see if you agree — if you do, why not sign the petition?

I appreciate the MPAA parent group who act as watchdogs for our families. But this time, they would do better to care more about our children’s bodies and souls than about the effects of swearing on their tender ears.